Remicade and Tiredness: What Users Say

• J R...
• Taken for 10 years or more
• May 14, 2019

For Crohn's Disease, Maintenance "I was diagnosed with Crohn's disease when I was 26 years old, and I am now 66 and have been on Remicade since 2008. I get my infusion every 8 weeks, and for me, it works for my Crohn's. I am somewhat tired after my infusion, sometimes the next day for about half the day. For me, I can't imagine not being on it."

• Jes...
• March 24, 2015

For Rheumatoid Arthritis "I had been on Remicade for many years with no side effects at all, perhaps a little tired every once in a while, but nothing serious. My doctor and I questioned whether I had rheumatoid arthritis. Then, all of a sudden, the Remicade stopped working, and bam, I had 2 flares that were unbelievable before the doc could get anything to work for me. I was heartbroken because it was such a good medicine for me."

• A H...
• Taken for 10 years or more
• July 25, 2017

For Crohn's Disease, Maintenance "I have been on Remicade since I was 7 years old when I developed Crohn's disease. I am 26 years old this year. For the past 19 years, I have been receiving this medicine, and it has kept me healthy. You do need to find a cycle, be it 4, 6, or 8 weeks, for your infusions. I do every 6 weeks, and it keeps my symptoms minimal. The day of and the day after the infusion, I feel like crap, tired, painful joints, but after that wears off, I feel a lot better than before the infusion."

• Mom...
• Taken for 1 to 2 years
• December 29, 2014

For Crohn's Disease, Maintenance "My son started Remicade at 13 years. He has severe Crohn's flare-ups, and this was a last resort aside from surgery for him. The Remicade treatment gave him few side effects. He didn't get any headaches or tiredness. And he didn't get sick easier like they said he would. When almost our whole house (7 of us) got the flu, Micah didn't. Micah just took his last dose 8 weeks ago after being on Remicade for over a year and a half. (Micah was on Lialda too.) Even when they used the amount of Remicade, Micah was still getting flare-ups every other month or so. They tested his blood and found out he had antibodies to the Remicade, which means his body was attacking the Remicade, and that's why it was only working right after the infusions."

• She...
• September 29, 2013

For Psoriatic Arthritis "I had my first infusion last week, and within 3 days, I can honestly say I have no pain for the first time in weeks. I didn't have any reactions or side effects except for feeling exhausted, but that may be related to not being able to sleep for weeks prior due to pain. I am so happy with the effectiveness and results I have had. I would definitely recommend it!"

• Jkl...
• March 30, 2016

For Crohn's Disease, Maintenance "This nightmare all started 9 years ago with an abscess. This turned into a fistula. The fistula went away after years, then I developed another one on the opposite side. Then multiple fistulas. 10 surgeries later, and now I have a fistula through the vagina. I finally changed doctors. My doctor put me on Remicade and methotrexate, and I am finally seeing results. Extremely tired, I could continuously sleep my life away. I haven't felt any inflammation for weeks. No pain pills for 4 weeks now. So cross my fingers this works."

• Gut...
• June 15, 2013

For Crohn's Disease, Maintenance "After resisting having read American Black Box warnings, I was finally persuaded through my consultant's actual experience with the medicine - that and having 6 operations, colostomy, and the disease still beating me. I was exhausted and unable to walk or do anything other than essential basic necessities - if that. I have had three infusions of Remicade so far along with steroids for peri-anal fistula, Crohn's, at two-week intervals, and I have some shade of a life back. Immediately after the medicine, I am very tired. I have headaches that last for about four days at a time, paracetamol doesn't touch them. I get bad cramps in my legs, especially at night, and occasional mild flare-ups, BUT NOTHING like before. Stress plays a factor in starting my flare-ups."

• col...
• Taken for 2 to 5 years
• August 13, 2016

For Crohn's Disease "I have a perianal problem with my Crohn's... Remicade helped me a lot, I have less diarrhea... But... I'm very tired all the time... I have sinus infections every 6 weeks... eye infections... and a urinary infection. I don't know if I want to continue... My Crohn's is better, but I'm sick all the time."

• BCD...
• Taken for 1 to 2 years
• November 24, 2020

For Psoriatic Arthritis "At 67 years old, I have been using Remicade for 20 months for psoriatic arthritis. For the first year, I felt good except for being tired, but all my psoriasis cleared up completely. Then I needed some medical work, which delayed my infusion another 6 weeks. My body started having major pains, which migrated to different places every few days. I could barely walk, then my shoulders hurt so bad I couldn’t sleep in bed or get out of it. Then I couldn’t hold a spoon or raise my arms to get a cup from the cupboard. My wrist bones were throbbing, even pain meds didn’t help. Once I got my infusion, it went away in two days and I was back to normal. Then, just before my next infusion, it started again. Once I got the infusion, it went away. Some psoriasis has returned, and my hair has started to fall out, but very slowly. Very concerned my body is now hooked on it, and I hope to try something different."

• Mva...
• Taken for 6 months to 1 year
• June 22, 2022

For Ulcerative Colitis "No effect on my ulcerative colitis but made me extremely lethargic. Swollen in the face, bags under my eyes for months afterwards, and general feeling of a different unwellness added to experiencing UC."

• bjd...
• September 9, 2009

For Crohn's Disease, Active "It made me ill for 2-3 days after infusion, including headaches and nausea. I was also very sluggish and more tired. That was hard to accept with the acute chronic fatigue syndrome I already deal with."

• Ale...
• Taken for 10 years or more
• March 29, 2023

For Ankylosing Spondylitis "God's gift to arthritics! I’m usually a bit tired for a day or two, but that’s fine as it’s a happy, pain-free tired."

• Kim...
• Taken for less than 1 month
• May 16, 2024

For Rheumatoid Arthritis "I had my first infusion on May 9, 2024. I felt very tired the next two days and my skin on my fingers and toes began peeling. Heartburn became severe."